Abstract
The internet is enabling people with rare diseases to connect with others with the same condition and to access information and support in ways that would not have been possible in previous decades. Through a series of interviews with key stakeholders, and written in an accessible “patient-friendly” manner, this chapter provides numerous examples of how these vital connections have helped people with rare diseases and how the potential of this technology is only just being realized as a powerful tool to advance research in the area.
Keywords
- Amyotrophic Lateral Sclerosis
- Rare Disease
- Spinal Muscular Atrophy
- Electronic Health Record
- Alliance Health
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.
Synergy—the bonus that is achieved when things work together harmoniously
MARK TWAIN
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Acknowledgments
Many thanks to the following persons for giving up their time for me to conduct interviews: Nate Lee (SMAspace), Ben Heywood (co-founder, PatientsLikeMe), Nate Gross MD (co-founder, Doximity), Kathryn Swoboda MD (Associate Professor of Neurology and Pediatrics, University of Utah School of Medicine), David Goldsmith (Vice President of Product Partnerships and Development, Alliance Health Networks), John Mattison MD (Chief Medical Information Officer, Kaiser Permanente, Southern California) and Ana Rath (Chief Scientific Officer, Orphanet).
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Montini, L. (2014). Health 2.0: The Power of the Internet to Raise Awareness of Rare Diseases. In: Bali, R., Bos, L., Gibbons, M., Ibell, S. (eds) Rare Diseases in the Age of Health 2.0. Communications in Medical and Care Compunetics, vol 4. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-38643-5_9
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DOI: https://doi.org/10.1007/978-3-642-38643-5_9
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